Posts Tagged ‘advocacy’

So, you all are probably aware by now that I’m a guest blogger for Mile High Mamas, right? I’m still so fired up they see fit to post my musings……and yet, I’ve been so wrapped up in getting my act together in 2012 that I failed to notice they had posted another one of my guest posts. Here’s a link to it. I’m still so floored by the responses I’ve gotten from people via that venue. It’s just wonderful.

And, now, another amazing website has picked up my blog. Remember when I wrote about the documentary, Refrigerator Mothers? Well, unbeknownst to me, the folks who put together that amazing documentary also have an amazing non-profit called JJ’s List. The site is basically a review of disability friendly businesses…mostly in Chicago but nation wide as well. Amazing, right? (Have I beat that amazing horse enough yet?)

Anyway, someone at the company and I started chatting a while back and would I mind if she profiled my blog on their monthly D-blogger review? Well, of course not!!! What an honor!

But, I had no idea how wonderful the review was going to turn out to be. J calls it a “Siskel & Ebert” style review…and it sounds like I got 2 thumbs up. Take a look and spend some time getting to know JJ’s List. They’re pretty amazing.

I’ve had this post in mind for almost 6 months now, since I first learned the phrase “Refrigerator Mothers” at one of the many autism related speaking engagements/conferences/workshops I’ve been to in the past few years. I’ve finally been inspired to sit down and write it because of the Twitter trend #YouMightBeAnAutismParentIf. If you’re not familiar with Twitter, if you want a particular topic to be found, you can use a hashtag to qualify it. Then, people can search that hash tag and see what people are saying about it.

##YouMightBeAnAutismParentIf has been running for two solid weeks now. I’ve found myself spending quite a bit of time on it because I find comfort, support and a little bit of awe in what I’ve read. The overall themes are that these parents, no matter what, pour their blood, sweat and tears into their children. They fight, claw, crawl, shout, yell, haggle, negotiate, and write to make the world a better place for their child. To get the support their child needs to live a quality life. They read, educate themselves, become advocates not in the name of some higher good but because they have to. They’re the only ones who will. They’re the ones living with autism day in and day out. They do it at the expense of themselves. And they do it out of love and necessity.

Overall, the single thing that is most apparent is that these parents love their children. Fiercely, determinedly, unconditionally and forever.

Hmmmm….I keep saying “they”. I should probably say “we”.

It’s hard. It’s hard as hell to constantly be proactive with your kiddo. To be understanding when you’re really just a little tired and worn out. It’s hard to have to fight with insurance companies, our government, our schools, our jobs to do what we need to do for our kids. It’s hard to have to reconsider your entire life, refocus it, accept it for what it is and eventually embrace it.

The term refrigerator mother was coined around 1950 as a label for mothers of children diagnosed with autism or schizophrenia. These mothers were often blamed for their children’s atypical behavior, which included rigid rituals, speech difficulty, and self-isolation.

The “refrigerator mother” label was based on the assumption that autistic behaviors stem from the emotional frigidity of the children’s mothers. As a result, mothers of some children on the autistic spectrum suffered from blame, guilt, and self-doubt from the 1950s throughout the 1970s and beyond: when the prevailing medical belief that autism resulted from inadequate parenting was widely assumed to be correct. Some present-day proponents of the psychogenic theory of autism continue to maintain that the condition is a result of poor parenting. However, others merely point out that some conditions are perhaps psychological in origin rather than physiological, and that this is not necessarily a reflection on parenting skills.

In 2003, Kartemquin Films released Refrigerator Mothers, a documentary that takes a look at American mothers of the 1950s and 1960s and the blame leveled by the medical establishment for the mothers causing their children’s autism. The documentary gives voice to women who no longer accept the blame that was once common for mothers of autistic children. Making its television premiere on PBS’s P.O.V. series, Refrigerator Mothers was featured in a January 2010 issue of Psychology Today that focused on the racial and class stereotyping of autism.

Take a look at the documentary. Go ahead, click the link and settle in. It’s a little long but well worth the time. And, don’t forget to grab a box of tissues. I’ll be here waiting when you’re done.

According to Bettelheim, autism is caused by the mother’s emotional rigidity. You got that, right? So, back in the 1950s and 1960s, if a child had autism, it was the mother’s fault. And the best solution was to institutionalize said child to get them away from their mother and put them in an environment that could work on undoing all the bad the mother had done.

If you saw the movie, Temple Grandin, you probably remember the scene in the beginning of the movie where Dr. Grandin’s mother is told just that. And she refused. But, she was one of the few. Imagine that you’re told your child has no hope of communicating, no hope of leading a “normal” life….and it’s your fault. And the best thing you can do for them is to put them in an institution. We’re so programmed to believe everything a doctor tells us, it’s no wonder these parents followed that advice.

We can look back now and think, “No, I’d never do that.” or “I can’t believe they didn’t fight, that they just accepted it.” But, hindsight is 20/20. I don’t think most of us would question that authority. Especially as women in the 50s and 60s. We’d do what they said we should do and then live with the guilt and questions for the remainder of our lives.

Things are better now. Certainly not perfect, but better. Yes, there are miles to go in fighting the school systems for IEP services, Fair And Appropriate Education (FAPE) and inclusive education. Miles to go in dealing with insurance companies and government policies. Miles to go to combat bullying and lack of acceptance. But I’d much prefer that over being told I was a Refrigerator Mother.

Have I mentioned how much I love living on Colorado? If you happen to follow me on Twitter, you know I’ve mentioned this 1 or 2 times before (ok, fine, it’s round about 100+ at this point). Living in Colorado, I get to make a last minute decision to go skiing for the day, I get to experience 60 degree weather on November 30 only to have it followed by 20 degrees and 3-5 inches of snow on December 1. And, no matter what. No matter what else is going on in my life whether it be good, bad or indifferent, I get to look out my window and see the mountains. It really doesn’t get much better than that.

But, another HUGE reason why I love living here is because I get to continue being a guest blogger for Mile High Mamas. Once a month, they post something I’ve written about Asperger’s and Autism. We only started a few months ago so I’m still telling the story of Z’s diagnosis (haven’t read that yet? Here’s part 1, part 2 and part 3). But, I’m excited to get further into what it’s like living with autism. At least from my perspective. It’s an amazing opportunity to advocate and educate. And, frankly, I love seeing the responses I get over there.

As I mentioned in a previous post, I struggle a lot with finding a balance between ‘readying the world for Z’ and ‘readying Z for the world’. I guess that’s true for any parent of any kid, NT or not, but it feels especially true for me with Z.

When we were first going through the diagnosis process, I was adamant about not allowing any special exceptions for him. I wanted him to be able to fit into society, square peg and all. I refused to be one of those ‘helicopter moms’ who always intervened and forced the world to bend to her child’s idiosyncrasies and always paved the way for her child. Yes, I want to help my child succeed and be happy. Of course I do. What parent doesn’t? But, I am also a realist. I know I won’t be (nor do I want to be) around forever to protect and hand hold my children. I want them to be independent and prepared for whatever the world throws at them. I don’t agree with the new fad of not allowing winners or losers in sports and giving everyone awards just for participating. I think it’s important for children to understand that you win some and you lose some…no matter how heart-wrenching it is for a parent to sit back and watch. That’s life, right?

Well, as I started learning more about Z, I realized that we did need to make some accommodations, with the idea being that if we make accommodations now and helped him along he wouldn’t need them later.

And, I decided I was ok with that. After all, it was still in line with my longer term goal of creating a fully functional member of society, right? And so far we’ve had some absolutely wonderful experiences with the people who surround our son. His SpEd team last year was incredible, working with him, accommodating his sensory issues and gently guiding him in his socialization experiments. His private therapy team was equally amazing. All together, they’ve helped Z make ginormous strides in a relatively short time period. So much so that we’ve paused a lot of his therapies because he’s doing so well. And he’s completely mainstreamed in a private school with no outside support.

But, I expected that from trained professional whose job it is to support him. I did not expect it from the other teachers/coaches who work with him. I take the kids to gymnastics once a week. It takes about 45 minutes to get there and I could probably find a gym closer but I am so impressed with the way the coach works with him and the way he’s responding that I’m reluctant to make changes. He also goes to yoga once a week as an after school club. Yesterday, he was completely out of control to the point that the instructor couldn’t run the class. They told me about it afterwards so I shared with her that he has Asperger’s. She was surprised but was very interested in learning more about what she could do to make the class work for him and the rest of the kids.

Here’s the flip side of that. Before we found our fabulous wonderful immersion school, I did a lot of research into different school options. I looked at public, private, charter and everything in between. We’ve even found a Plan B if it turns out a ‘typical’ school won’t work for either one of the kids. At some of the schools (public), they knew all about IEPs and Asperger’s. They’re required to by law. But, there were definitely differences in levels of acceptance of even the idea of having yet another kiddo on the spectrum attend their school. There was even less acceptance from many of the private schools. I was told flat out by several (not mentioning names) that they didn’t have the support system in place for Z. Period. Without even meeting him. They heard the big A and ran.

Can you guess who didn’t get our money?!

But, it all comes back to the dilemma and balance of preparing the world for Z and preparing Z for the world. I’m hesitant to tell the parents and the support staff in Z’s class that he’s got Asperger’s because I’m scared he’ll be just a label to them for the next 10 years. But, if I don’t tell them, like I didn’t volunteer it to the yoga teacher before she came to me, then his behavior problems are attributed to being a bratty unmanageable kid and not some underlying challenges that can be addressed if given the right tools.

J and I talked about it the other night and we’ve agreed that we should move forward with letting people know on an ‘as needed’ basis. Meaning we don’t necessarily need to stand on top of the school with a bullhorn but we should definitely share information when appropriate. It’s just hard sometimes to know when it’s appropriate and not too soon or too late.

I’m not sure this is the right path in terms of advocacy or raising awareness, but I think we do plenty on that front. This is all about walking that tightrope of information. To tell or not to tell. To ready or not to ready.